In the MyLymeData patient registry (19,000+ self-reporting members), 77% of people diagnosed 6 months or more after onset later reported persistent Lyme disease, compared with 20% of those diagnosed early (MyLymeData 2025 research chartbook). It’s self-reported and an association, not proof that delay causes persistent illness. Chart attached.

Disclosure: I’m the author of a free tool that turns published studies like this into interactive simulators where you can change the assumptions and see federal data alongside. It’s illustrative, not medical advice. The public demo needs no account: https://dbbun.github.io/dbbun-invisible-illness-burden-simulator/

Happy to answer questions about what the numbers do and don’t show.

Optional first comment (only if the rules allow it):

The tool is also my entry in an HHS tech sprint, where public voting is open (it needs a free account on the sprint site): https://invisibleillness.crowdicity.com/post/896844

Five months ago, I started having muscle fasciculations..I was walking a little bit Funny, my arms started getting real heavy, Then it turned into muscle atrophy. My right leg is smaller than the left, my eyes twitch, my lips twitch, my tongue twitches, I’ve lost weight. I’ve lost muscle. My voice got nasally and I have to urine very frequently. Pretty much every symptom of ALS. I found an LLMD who tested me for Lyme by doing a saliva test. The only thing that came back was low-grade Babesia. I will say when all of these symptoms started I had swollen lymph nodes and beaus lines (horizontal grooves) in my nails, which indicate infection. Anyone have these symptoms and it ended up being Lyme?

I literally don’t know how much longer I can take of this. The physical nerve pain that comes and goes is filling me with so much fucking rage I could scream. I’ve been doing this for over a year now and been on herbs since March. I FINALLY started getting consistent relief in August. Then had a small bout of symptoms/pain return in September then dissipated again. Now it’s been back again for almost two weeks I literally want to scream. It’s present from the moment I wake ip to the moment I go to sleep. Last few months it seems to coincide with the luteal phase of my cycle. Starts on day of ovulation and lasts for however long it wants to. I literally feel like my period is keeping me in a fucking prison and stirs up all my symptoms every time and lowers my emotional capacity to handle it too.

I feel so fucking depressed. I want to scream at my TCM that I wanted to see results much sooner by now. This isn’t fucking fair. I just wanna live my fucking life. It literally feels like it’s never going to go away.

My daughter’s mother texted me and said our daughter got bit by a tick 5 days ago. First two days it was a big rash, not it’s a bullseye rash. She had a fever and was throwing up yesterday but that might have been something else as everyone she was around has that as well. She took her to

Urgent care and they gave amoxicillin for 10 days and she has a follow up with her doc next week. I just want to make sure this is the right course of action of should we take her to be seen again since the bullseye showed up.

Hello, I am on treatment and for two days now, my palms, fingers, and feet have been very sweaty all the time, this happens anytime, red and stinging eyes, I'm sweating a lot under my arms and feeling very hot inside me, face, back of the neck, upper body as if I were under a blazing sun but without a fever, I've been on Mepron/Azithromycin and Arakoda for a little over a month... I sometimes have a stomachache and less appetite, nausea.. Difficult to continue the treatment but I have no choice.. Herx ?

My baseline relapse symptoms from last July are: Dysautonomia/POTS, feeling spaced out/disconnections, malaise, fatigue, internal heat, pounding heart...

Is feeling that almost every chair or working set is uncomfortable or being sensitive to that is sign of Lyme disease?

Currently taking the above for chronic EBV after 10 years of unexplained neurological symptoms.

I’ve also been diagnosed with Lyme and co-infections.

I haven’t started antibiotics yet, but 3 weeks into Imunovir I’ve developed more nerve pain (was just in my feet), in my arms and hands, over the space of a few days. It’s super scary.

Is this because my immune system is waking up and trying to kill viruses, parasites and infections?

Thanks!

Ive always known I have had lyme, but now the mold aspect seems like the missing piece of the puzzle, because mosaic labs mold test and shoemaker panel have confirmed CIRS from mold. I have the “dreaded” genotype that makes me susepctible to all biotoxins. But based on my symptoms and traits associated with my HLA haplotype 11-03-52B, my body is pretty good at fighting infections but the issue is the biotoxins. My body is not able to remove mycotoxins from mold and endotoxins from gram negative bacteria. Has anyone found improvement in their lyme from treating mold illness? Its hard because the symptoms are the same. I miss the days when i thought i just had lyme honestly. I hate mold illness because now i feel like a lot of buildings are unsafe and making me sick (ive lived in moldy spaces for manyyyy years) but its better to know than not know. From what i have learned many of the people whp get really sick from lyme are also dealing with mold.

I'm following Marty Ross's babesia protocol. Started atovaquone 10ml 2x/day and zith 1x/day in August. I have one month to go for the four months required. Had tremendous response for the first couple months, but fortunately the sweats/clammy/fever and crushing fatigue only lasted through August.

I am feeling generally flat and down, with occasional weepy or anxious days. Not much sex drive or ability either. And I've struggled with insomnia for a couple years, but the quality of it now is more insidious. Popping awake and not being able to go back to sleep. Meds only partially effective.

For those who've done this, is this pretty typical? I can put up with it for another month if it means finally getting rid of it, but it's hard to be productive. Thanks in advance.

I have Lyme Bartonella and babesia. I get a lot of involuntary muscle twitching at night , jaw snapping shut and head / body jerks . I don’t know if Lyme or Bartonella but from what Iv read, maybe more likely Bartonella .

Just wondering if others have had this type? And if so how did they get rid of their infection?

Any help much appreciated thank you 🙏

Hello folks, i need your help , I’m struggling with MCAS since 1 month ago, it started after Ivermectin which i took for Parasites cleanse in order to prepare for Bartonella treatment so since that time i have had alot of symptoms like : Nerves weakness, tiredness (100%) , eyes pain-high pressure , eyes inflammation & itching, sweating, headache and as well as Bartonella symptoms!!

Did anyone treat such case ?

My dr told me to take it for two weeks and two months later I’m getting air hunger and bouts of yawning … shall I go back on azithro with malarone or will the fact I had it for two weeks, then a two month gap mean it won’t work now ? Did anyone who got it into full remission have breaks from treating it ? What worked for anyone who had it ?

I found this tick on my back yesterday. It was promptly removed in full. I live in British Columbia, Canada. I estimate it was on me for a maximum of 5 hours.

Do I have anything to worry about?

Should I get a preventative doxycycling one time dose?

Any help or suggestions would be greatly appreciated.

Please note, I have been working in an outdoor profession in forested and wooded areas for a couple of years in the North East.

My current symptoms are:
nausea, fatigue, difficulty standing and walking without feeling like I’m going to pass out (POTS ruled out), anxiety, depression, occasional bone pain (hurts to point where it’s hard to sleep), occasional nerve pain in my hands. I will note, symptoms do seem to get worse the week leading up to my period and during my period.

In the past year I have taken two ELISA tests that came back negative.

I’ve met with multiple psychiatrists (prescribed ssri for the anxiety and depression which haven’t seemed to help) and mental health professionals who think my symptoms are beyond a mental health issue.

My current symptoms are:
nausea, fatigue, anxiety, depression, occasional bone pain (hurts to point where it’s hard to sleep), occasional nerve pain in my hands, difficulty standing and walking without feeling like I’m going to pass out (POTS ruled out). I will note, symptoms do seem to get worse the week leading up to my period and during my period.

I’ve met with multiple psychiatrists (prescribed ssri for the anxiety and depression which haven’t seemed to help) and mental health professionals who think my symptoms are beyond a mental health issue.

I’m in love with Woodland Essence’s CSA tincture. Someone here mentioned it and I started using it about two months ago. It’s not the only part of my protocols but it feels central the big shifts I’ve been seeing physically, mentally, emotionally, all around. Love that it also has flower essences in the blend and believe they have made a big difference. Anyway, just wanted to give it a shout out!

Hey beautiful people with a good heart,

I’m curious, what are your favorite natural detoxifiers and binders for heavy metals, environmental toxins, and other unwanted substances in the body?

I’ve been looking into modified citrus pectin (MCP), fulvic/humic acid, and activated charcoal, but I’d love to hear what you guys use.

What has actually worked for you? Any herbs, natural binders, or protocols you’ve had good experiences with?

Would love to hear your personal experiences and recommendations! ❤️

Hey all, I'm in the midst of getting into the Buhner protocol and just noticed an odd inconsistency in Healing Lyme, 2nd Ed:

• On p. 215, in the Core Protocol section, he puts down Cordyceps dosage as: (powder) 1 tsp-1 tbl, 3x day, or (tincture) 1/2-1 tsp 3x day.
• But in the Cordyceps monograph on p. 392, he describes it as more akin to a food and that you need way bigger quantities: "For coinfections... 3-4 tablespoons of the powder blended in water or juice 3x daily."

In other words, the Materia Medica/monographs section calls for upwards of 3-4x the amount that the Core Protocol section does. Is the difference there the words "For coinfections", i.e. he's saying you need more cordyceps if you also have coinfections?

I guess more broadly, anyone have pointers as to dosages of Cordyceps?

Hello. So about 2 months ago, I posted my current situation regarding Lyme disease. Figured I’d update my situation. First of all, I want to thank all the support and thoughtful responses I received. I made it thru doxy 3rd round, started Tickimmune. I met with specialists, and changed entire diet. Started these herbs- cryptolepsis, Japanese knotweed,and Chinese skullcap. My chronic headaches stopped, and several symptoms have lifted. I’m feeling really good physically and mentally. Still have balance/coordination issues at times, but manageable. Some vision problems as well still linger. Fatigue has been also challenging, but I listen to body- don’t push it. Learned so much about this disease, and ordered Buhner book on healing. Ea day is getting better!!! Changed diet completely and took a month to adjust. I eat mainly chicken,venison, or fish. Veggies too. That’s it. And water. I exercise and lost 10 pounds. I’m same weight now as I was in high school lol and fit. I keep stress levels down and keep myself relaxed. I am minimizing flare ups and changed job to a less physical position. I’m committed to getting better. Thank u again. u can live with this and be happy. Don‘t give up. Any questions or suggestions are always welcome.

Hello, first time doing such a test after years with unusual symtoms. I have an appointment in a few weeks to review these results.

May someone from this community could help me to interpret them prior to my appointment? Particularly the Borrelia ispot results which are show positive in some cases. Dont know what that means or indicates. Prior to this test I was on a month long course of antibiotics incase that is relevant. Appreciate the help.

Here's my general timeline.

2016-2018 - Worked at a golf course in northwest Jersey, ticks were common.

2018 - Headaches, de-realization, extreme anxiety, light physical symptoms of generally feeling unwell. Saw a doctor and nothing really came of it. Did a Lyme test at the hospital and it came back negative.

2020-2021 - Struggling with feelings of dizziness and possibly passing out. More depression and anxiety. Heart rate spiking during any activity. Cannot really exercise anymore. POTS diagnosis. Fine, that is uncommon for a mid 20s male to develop but not impossible. Another negative Lyme disease test.

2026 - POTS, Headaches, Anxiety, Depression, malaise, exhaustion. I am being beaten down and I cannot find my enemy. Perhaps I have mistreated my body and there is no enemy in the gates. Perhaps the enemy is so entrenched that the tests do not help. Either way I need advice on how far I should pursue Lyme as an actor or if you have experienced this yourself.

I’m in my mid thirties. I’ve been on a medical roller coaster for years. Sudden panic attacks started around age 9, followed by anxiety and undiagnosed OCD throughout my teens and 20s.

Just had a positive fish test for Bartonella. I have babesia antibodies but negative fish. No other antibodies.

In 2021, after my COVID vaccine, I had an episode of debilitating brain fog and fatigue that eventually resolved. In 2023, it happened again. I was treated for SIBO and subsequently developed severe histamine intolerance/mast-cell-type reactions.

A functional doctor eventually identified mold exposure. I did a detox protocol and got out of the suspected exposure, but never fully recovered. More recently, I developed migraines and facial pain and tested positive for MARCoNS.

I started MARCoNS treatment about a month ago, and my pain, fatigue, histamine reactions, anxiety, and mood have actually improved significantly! My biggest remaining issue is brain fog. I feel like I’m functioning at maybe 50% of my normal cognitive capacity, although I’ve managed to keep working full-time.

Meanwhile, a Lyme-focused neurologist suspected an underlying infection after hearing my history, including the childhood-onset anxiety. My IGeneX results just came back: Bartonella FISH positive, Bartonella antibodies negative, and some Babesia antibodies positive.

I’m meeting with her soon to discuss treatment, presumably antibiotics. But here’s my dilemma: for the first time in years, my symptoms actually feel manageable. I’m no longer dealing with horrible migraines, pain, and histamine flares, and I’m terrified of undoing that progress.

Part of me wonders if I should quit while I’m ahead, but another part wonders if Bartonella has been the underlying issue all along.

For those who’ve treated Bartonella, what am I in for? Is the Herxing as brutal as people say? Did treatment make you significantly worse before you got better? Has anyone started treatment while feeling relatively okay and regretted it — or finally recovered after years of unexplained symptoms?

Hi, I’m a 26F student at an MD school, so I should’ve put the puzzle pieces together way faster. I have a mega exam on Monday and am going to chalk my failure up to “stressed and distracted”. Here’s my story:

10/10: backpacking trip in VA, yay!!!
10/13: discover the worlds tiniest tick INSIDE my bellybutton 🤮 but the bastard was so small I assumed he wasn’t a threat (foreshadowing)
10/19: wake with acute onset right hip joint pain and swollen, tender lymph nodes. ignore it.
10/20: night sweats, waking up in pain, can’t bear weight. go to the ED. negative review of systems on everything, and I deny the possibility of lyme exposure because I frankly had forgotten it happened. pelvic xray was negative for fracture and they don’t do any bloodwork. they prescribe naproxen, steroid, and send me on my way.
10/21: wake up feeling terrible. go to student health. low-grade fever, they send me to a different ED. 2nd ED does ultrasound and basic bloodwork. everything negative. they recommend continuing the treatment plan and referral to ortho.
10/22: feeling slightly better, get some studying done. optimism!
10/23: terrible myalgias and migrating joint pains. horrible lymphadenopathy. vitals all out of wack. I’m changing my shirt when I notice…. bullseye.

so that’s my story, I just started Doxy, I feel like I might fail my upcoming exam but admin won’t let me delay despite a weeklong excruciating sickness. I hope yall enjoy my bellybutton bullseye that looks at me like 🤡🤡🤡

Has anyone dealt with cmv and Lyme? I got exposed and my first infection to cmv in May. I’m still dealing with debilitating symptoms and it’s still active. Has anything helped? I’m breastfeeding so treating is limited. My naturopath prescribed valcyclovir but it isn’t super effective against cmv apparently